I don’t have to tell you that you’re never prepared for any day living with type one diabetes. When I was diagnosed at the ripe age of thirty-freaking-five, I had no idea what to expect. I was told about the symptoms, I read the pamphlets, but even I knew that nothing would be predictable. It’s been five years since I was diagnosed and even though insurance and technology has made living with this mental and physical crutch slightly easier, nothing ever prepares me for the daily physical challenge. If you are vigilante about your diet and your insulin maintenance, therefore keeping your numbers between those lines, the symptoms of hyperglycemia, and my all-time fave, hypoglycemia, won’t wreak havoc in your life. But, if you’re like me and have those complicated days caused by over-night lows, random spikes or any super unknown factor, your body goes on a roller coaster ride. And it sucks. Your entire day becomes clusters of literal physical highs and lows that leave you drained, tired and exhausted, and you might have not even left your bedroom. Or you might have had to go to school or playground and attempt to live the already unpredictable life of a child.

One of the best things, I believe, we can use social media for as a community is to share, other than cure-hunting. Cure-hunting should always be number one. I love being able to go on any one of my bajillion devices and read about or look at pics of all things related to type one diabetes. Health updates, technological advances, cure research developments, management tips or personal stories just to name a few. And I love the personal stories. I love how we share what we go through, especially the honest moments. I used to be really involved in a lot of type one fundraising events and I loved seeing those stories in person. I loved sharing my story with another T1D and enjoyed learning how they lived and thrived. It made me live a better life. I had connections with all those people and those children because, we had the same day to day functionality issues and the drama that comes with it. Functionality issues, yeah, that sounds good. But I can tend to get really caught up in what I see online, especially when I can relate. For any parent or caregiver, watching what we go through can’t be easy. When I see a parent post a picture of a meter reading with a 58 or a dexcom line that looks like a schizophrenic stock market, it really tugs my strings. I see hundreds of comments with advice, what to do’s, or ‘that happened to us’ from parents, but I wanted to tell you, as an adult, what that 58 and that spastic cgm line can feel like. As an adult, I can try to put into coherent words what some of my experiences with hypoglycemia have been like.

I’ll never forget the first time I felt my blood sugar totally plummet. I had been diagnosed for only about 6 weeks and had just gotten home from a 28 day rehab facility for alcoholism. That was an experience unto itself. When I was diagnosed my A1C was 15.7, so my sugar level was never really low. I really don’t think my sugar was ever in the 100’s since the diagnosis. As far as maintenance, I just did everything I was supposed to. I would check my sugar and then take a shot of insulin that corresponded on this chart I was given, the higher the glucose level, the more insulin I took. I had another chart for how much insulin to shoot up depending on the amount of carbs I was going to eat for any meal. I would test again two hours after I ate and take a compensation shot for however high my glucose level was, which was always. That afternoon, I was home alone and making my lunch. Lunch was a big production back then, consisting of all four food groups. Healthy stuff. I would do all the carb counting from the packages and books. I would do all that math with ratios and I would prepare my shot. On this day, just as I’m about to check my sugar for this grilled chicken sandwich, I suddenly feel hot. That was the very first sensation, and usually always is. My body temperature gets really warm. I was standing at the kitchen counter in a t-shirt and shorts, and all of a sudden it felt like I was generating internal heat. I could feel myself slowly starting to sweat and I was starting to freak out. I started feeling heavy too. Physically heavy. My bones, the inside marrow of my bones, felt like each one of them weighed 500 lbs, from my skull to my toes. I went and sat down on the couch and by this time, sweat was running down my temples, and soon I was profusely sweating. I have put my body through a lot, and the hardest I ever remember sweating was onstage under really hot lights or working construction one summer, but that was nothing compared to this. Within 60 seconds, my t-shirt was soaked and I couldn’t think straight. Everything was in slow motion. Even my brain was going slow. The fact that I was alone is probably the only thing that put me into motion. I was only able to move because of primal fear and instinct. I very slowly figured out that this oversized pile of invisible jello that had fallen on top of my body, must have something to do with my new type one diabetes. I was mad. And low. But scared more than anything. I got up and went to my meter, which never left my side my side and my sugar was 70. I couldn’t tell you what 70 felt like today, but back then it was brutal. I had never seen a number that low. I just sat there on the couch trying to stand up, and it probably took me a few minutes to figure out how to do that. Honestly, I felt drunk, but without the fun of being drunk, which I knew all too well. It took a long time for me to get up, and when I did, I just roamed around aimlessly, with tears streaming down my face. I thought I was going to die. I knew what to do, but I just couldn’t do it. I knew I was supposed to bring my sugar level up with snacks, or 15g of carbs, but how the hell was I supposed to do that? Incidentally, I raise a toast to the T1 that can bring their sugar back up from hypoglycemia with only 15 grams of carbs. You’re a rockstar. But I felt like sludge. And my pure inability to move at any speed was astounding. I went and leaned up against the kitchen wall, only because it could support my weight. I felt so heavy and weak I thought I could fall straight down. I remember I ended up standing right above the air conditioning vent on the kitchen floor and how good the cool air felt on my skin. My pug Slash had been circling around me this whole time because he knew something was up, and I was actually mad at him because I feared I would fall over him. Then I hear my phone ring and it was the loudest thing I’ve ever heard. As I nearly tripped over Slash, I got my phone off the counter and it was Mom, thank God. She called to check on me and I tried to explain what was happening but I knew I didn’t make any sense. I kept saying ‘I’m low’ but kept trying to explain why I might’ve been low. Of course, she knew what to do and told me to hurry up and drink a Coke that she knew was in the fridge. Divine intervention. That Coke didn’t stand a chance. That sugary, carbonated concoction got annihilated. It was so cold, so damn tasty. I sat there dumbstruck that I could consume anything at that speed. What was going on with my body? Of course, my stomach felt awful and could barely handle the carbonation. I was sitting on the floor at this point, Slash by my side, the Coke can rolling away. I was still hot and I was still crying and even more scared. I felt sick and so tired. I felt hunger, but in sharp stomach pains. My head started to hurt from the inside, but then I realized it was hurting the whole time. Right at that moment, I started realizing a whole lot of things. I don’t know how long I was on the floor, but the Coke started working and my levels must’ve started to rise again because I could think clearer. I still couldn’t move any quicker, but I was comprehending what just happened and why it happened and I was angry at myself. I looked around and I realized that this was reality. I was realizing things like sugar could kill me, but it would also save my life. But mostly, I was realizing that this was going to be forever. That this could happen anytime, anywhere. I still really didn’t know why I dropped. The awful part is I was getting ready to inject a large dose of insulin at that moment. It took a long time for the physical effects of that episode to wear off, at least an hour and a half. The physical toll was one thing, but the mental anxiety that set in was, and is something that has never, ever left me. Today, my entire diet, lifestyle and existence seems to concentrate on avoiding hypoglycemic events. I used to be scared of heights, now I’m petrified of lows.

I mentioned things moving in slow motion, but it’s a weird slow motion effect. You kind of feel everything starting to shut down, all your nerves feel it too. There’s different tingling sensations I feel almost inside my brain, in the core of my spine, and throughout my extremities. The tingling sensation then almost transforms into this pressure, or pushing down feeling, a heaviness. The hair on your head feels like lead. Imagine if you were a car and you were zipping down the interstate in the normal flow of traffic. All of a sudden, you start to feel the AC going out. You know you shifted to 5th gear, but now you feel the transmission slip to fourth. Then the radio station that was crystal clear is nothing but static, and you just noticed the wipers don’t work for the rain that just started to fall. Your car is starting to slow down and people are passing you. You try to make sense of what you see on the dash and there’s a bright check engine light on. Beside that you notice the fuel light and battery indicator blinking at you too. Everything is shutting down, you’re running out of gas and your battery is going dead. Don’t look now, but each of your tires just went flat. Everything that’s essential in that car functioning has slowly left it. That’s what it feels like sometimes. Some are not so bad, and some are very excruciating and the feeling doesn’t leave. If you have a bad low sugar experience, sometimes you can just count yourself out for the rest of the day. For me, they’re usually followed by an extreme bout with hyperglycemia because I overcompensate. I try not to, but sometimes a juicebox, or 3 cookies or a powdery tablet just won’t do it. Of all the things type one diabetes has given to me, hypoglycemia is the one I hate the most. It stops me from doing what I want. That’s the part that gives me the most limitations. I hate that it happens to other people, especially to kids. I hate how unexpected the episodes come and how indiscriminate they are to timing and location. Do not tell my endo, but to slap hypo in the face I have only the finest candies, cakes and sodas to alleviate the drop. Hypoglycemia can shove it now, because I celebrate like its Halloween on Willy Wonka’s birthday (Moderation folks, take the delicious candies and sarcasm in moderation).

I’m pretty good at maintaining my glucose levels, for the most part. Today I wear a Dexcom cgm and an OmniPod insulin pump, and I do not know if I could breathe without them. I could not be more serious. Some people are obsessed with staring at their phones, I stare at my PDM and my receiver. I spend all day adjusting temp-basals and extending bolus’ just to maintain a balance. There is so much micro-managing I do, I feel like I should really be an OmniPod all-star. But I feel like I have no choice. And I do everything in little increments to avoid the extreme fluctuations. I don’t eat and take a corresponding insulin amount anymore. I’m very insulin sensitive, so I take a safe amount of insulin, and eat to that amount. While I don’t rely on my Dexcom for dosing, I watch the trends like a virgin hawk lookin’ for tail. I rarely take my eyes off that. The Dexcom has been become essential to survival because I can no longer feel normal lows, only the extreme ones. I can drop to as low as 60 and not even know it. I don’t know if it’s tolerancy to symptoms, but many times I’ve been in the 50’s when that first feeling of warmth comes. And that’s scary. I also sleep with candy. I’ve started this phenomena called ‘dawning’ where my sugar inexplicably spikes only between 4am and 7am. They call it that because morning wood was already taken. But I’ve adjusted my temp basal to try and control that and sometimes it works like a charm, sometimes it doesn’t and I still spike, and of course sometimes it works too well and I start the day from the depths of hell. It’s all a gamble. Everything’s a risk and we always have to be careful. Unfortunately, whenever this car starts to go dead, while there’s no AAA I can call, I can have a Coke and smile.

What if I never even had diabetes? What if I didn’t bleed all day? What if it’s really just water? What if the doctor was wrong? What if tomorrow it’s gone? What if I never, ever eat again? What if they find the cure? What if we run out of insulin? What if none of this ever happened? What if I’m part of a plan? What if it’s all a scam? What if I never see again? What if I never find the answers I’m looking for? What if my parent’s never stop blaming themselves? What if they never stop pointing fingers? What if I’m never plugged in to a pump? What if all of it was free? What if my work doesn’t even matter? What if I don’t make it? What if it’s all for a reason? What if I don’t get the job? What if this was my purpose? What if I’m a piece of the puzzle? What if I really make a difference? What if this made the fabric of my being stronger? What if I can be what they hoped? What if I never, ever found out I was this strong?

Charlotte Mayor Patrick Cannon declares it T1D DayOne of the many banners participants sign every year, this one form 2010, the year I was “dx’d”

A Walk In Our Shoes–from Saathee magazine

By Neel Jadeja

If you’re like me and grew up in the Charlotte area, there’s nothing quite like the anticipation of spending a springtime Saturday at Carowinds Amusement Park. As my friends and I drove south on Interstate 77 in the darkness of 5 am, I was more excited about this trip than any previous wave-pooling, roller-coasting, funnel-caking excursion. This trip was a mission. On this Saturday in late April, Carowinds was hosting the 2013 Walk to Cure Diabetes sponsored by the Juvenile Diabetes Research Foundation. The JDRF is the world’s largest fundraiser for type one diabetes research. Type 1 diabetes (T1D) is an autoimmune disease where a person’s pancreas stops making insulin, a hormone needed to get energy from food. It strikes both children and adults randomly and changes their lives forever, resulting in insulin dependency via injection or pump. The annual Walk draws teams of families and friends of diagnosed Type 1 diabetics walking with the goal of raising money for important diabetic research. This year’s Walk at Carowinds drew nearly 6,000 participants walking for the disease that affects 30,000 new cases every year.

The Walk to Cure Diabetes is always a special day for me since I was asked to serve on the Walk Committee, handling the entertainment and media duties. That seemed like a natural fit for me considering my background and it was a great way for me to give back and show my appreciation. You see, in May of 2010, I was one of those 30,000 and was diagnosed with Type 1 diabetes at age 35. It has been a long road to get myself to the point where I understood, comprehended, and accepted my condition. The work of the JDRF and the help of the Charlotte/Greater Western Carolina’s has helped me learn about T1D and introduced me to a community of friends that help us all understand diabetes and collectively channel our fundraising efforts. They have welcomed me with open arms and allowed me to be very involved with their many community-based fundraisers. And to see this massive undertaking, completely directed at my medical condition, and to be involved in the process, is both overwhelming and humbling.

But there is plenty to do as we await the arrival of the day’s participants. The large stage has been built with an impressive sound system to reach the masses and we have local radio personality “Tanner” from ‘Tanner in the Morning’ who will be our master of ceremonies. I have tapped Vyzion Radio’s DJ Jojo Stubbs, who’s two year-old granddaughter was recently diagnosed with T1D, to serve as the morning’s musical entertainment, he’ll be playing the standard sports themed jams that will get everybody pumped and in walking mode. Another highlight of the Walk were the warmup exercises performed with local trainer Julie Sawyer of Tuff Girl Bootcamps assisted by the Charlotte Bobcats Ladycats dance team. What really set this year’s walk apart from previous years was a special visit by Charlotte’s Mayor pro tem, Patrick Cannon, who carried a proclamation by Mayor Anthony Foxx recognizing the day and the JDRF for it’s efforts.

The event is as colorful, vibrant and full of life as the attendees and participants that fill up the park’s Palladium Plaza. Brightly colored tractors and forklifts provided by sponsor Sunbelt Rentals hold up banners and signs directing Walkers towards registration and refreshment stands. These people are energized, focused, and most definitely determined. ‘Team B-Force’ is all adorned in matching blue t-shirts showing their support of Brady Sutton, a young, energetic boy diagnosed with T1D. Brady’s mother Anne, a staunch research advocate, has been here before and appreciates the camaraderie among the volunteers and the dedication they have to finding a cure. Another large group in neon green shirts are showing their support of ‘Andrew’s Quest’, and the orange group huddled by the stage are here for ‘Madison’s Motor Patrol’. After a heartfelt rendition of the Star Spangled Banner by another person who’s family has been affected by T1D, this crowd is ready to go walking!

As one of the organizers, I don’t join in to walk the entire 5K route. Most of us stick around the plaza area assessing how smoothly the registration process was for folks, or how stocked the refreshment stands are for the when the walkers return. One of the tricky aspects for organizing JDRF events is remembering the special needs for all those in attendance; we are type one diabetics after all. The game of balancing blood sugar can be a gamble when combined with strenuous activity on a warm day. These prepared tables are stocked with healthy lettuce wraps, protein-filled granola bars and low sugar fruit juice, all provided by generous sponsors. Seeing all this effort; an entire amusement park at our disposal, the thousands of dollars in sponsorship donations, and not to mention the countless hours of preparation by the JDRF staff, really paints a picture of the scale these people are working on.

The JDRF was founded in 1970 and to date has raised more than $1.7 billion for diabetes research. More than 200 Walks are held each year in the U.S. and the Carowinds Walk is in it’s 23rd year. I am only in the 3rd year of what will be a lifelong partnership between me, the JDRF, and my new extended family. Today, we raised more than $800,000 for research. We didn’t quite reach our goal, however you would have never known judging by the faces of each and every walker as they crossed the finished line. And everyone had a memory-filled Saturday at Carowinds in the spring.

Our “Walk Season” was still not over yet. On June 18th, we gathered once again at McGlohon Theatre for our annual meeting and awards celebration. As if this organization, in my mind, hadn’t already done enough, I received a Golden Sneaker Award for raising over $1,000 with my own Walk team, Ones N’ Noses. Now I have received many little league sports recognitions, maybe a perfect attendance certificate twice, but there is something special about the diabetes trophy given to me during the award banquet. It doesn’t remind me that my pancreas doesn’t work or it doesn’t remind when to check my sugar or take an insulin shot. But it lets me know that there are people out there that are trying. That there are people out there just like me. And that there is an organization out there that’s going make sure a lot of people have many more happy, springtime Saturdays at Carowinds.

taken at The Chop Shop in Charlotte, NC, 2013. Darlings of the Underground

This is my first blog entry. I’m not sure why I’m attempting to be a blogger. I’ve never really seen the point in it especially if you weren’t a famous writer or critic and getting paid for your opinion. Then I discovered the #DOC, Diabetic Online Community, and everything changed. I found other people that have what I have. And they’ve had it longer, and they know more about my condition and they all sound so smart. I’m new to this, but what I’ve learned is the strength of this community is out of this world. The information and resources at your fingertips is unreal. I do a lot of volunteer work with my JDRF Chapter and it’s helped me immensely in understanding type one diabetes. But I can go farther. I can do more. I can learn more, and I can teach more. I’ve seen the importance of connecting and sharing. And I want to be a part of it. If you can cut and paste the link below into your browser, it will tell you how I got here. I want to know how you got here.